Millions missing


Today, many ME patients, families, and friends are joining around the world in #MillionsMissing protest. This event was organized to remind people of millions that are missing due to/from ME. #MillionsMissing signifies not only millions of patients around the world who are missing out on their lives, but also millions of research funding that is missing for this costly and disabling disease. For your reference, billions of dollars are lost each year due to ME in the United States alone, but only about 5 million dollars has been allocated annually for research by the government. Male pattern baldness received more money.

I am one of #MillionsMissing from school. I have been on leave from my graduate school because I could no longer continue to work on my degree. My B.S. in geophysics is just an expensive piece of paper right now.

I am one of #MillionsMissing from work. I have to rely on my husband financially while contributing nothing to our household. It hurt my ego, but I didn’t have a choice. I loved doing scientific research. I would like to think I was good at what I did, and really miss the intellectual stimulation.

I am one of #MillionsMissing from family. I so wished to be there to watch my nephew grow up. I was there when he was burn a few years ago, but I’ve missed every mile stone of him growing up. I have not seen my grandma, who actually raised me, in years. Unless my health dramatically improves, I will not be able to attend my cousins’ weddings. The worst of all for me is that our own family plan is on indefinite hold. I really miss our child that we do not have.

I am one of #MillionsMissing from travels. We planned a trip to Disney World a few years ago. We postponed it multiple times, saying we’d go when I get better (before ME, my chronic back and joint problems meant hours on feet would be difficult; I was doing PT to help). Now we wish we just took the trip even if I’d needed to rent a scooter. There were many more traveling opportunities while I was still in school that I had to give up due to my health. Now, my only travel recently was lying down in my car while my husband drove several hours, and staying in the hotel the whole time except for a few hours to go to the bowl game. It took me a few months to recover from that. I once went on a backpacking trip for six weeks alone. It was a trip that forever changed me. My memories from the trip is fading away. Will I ever get to experience the world so freely again? 

I am one of #MillionsMissing from the protest. There is a live protest an hour away from me, but I am unable to attend. I will actually be missing from doing any related online activities because I have a procedure scheduled. Luckily (?) for me, I have another medical problem that is compounding my ME symptom, and this procedure is an attempt to help with that other problem. If I am lucky, I actually only have mild or moderate ME and I would be able to return to work and school. If not, I would have to wait for ME research to progress enough to have treatment options. 

There are so many small things and big things I can list under #MillionsMissing, and all other ME patients would be sharing the same sentiment. I am not trying to earn pity and sympathy from people by talking about everything I’m missing out on. Rather, I would like to remind people that this is normal for patients with ME at the moment. And we need everyone’s help to change it. 

I walked around for six weeks despite my  back and joint pain, because I was used to pain and that was something I could push through with my will and determination. But if I tried the same thing with ME, I would be left with severe relapse that I may never recover from. We, patients with ME, are left with no choice but to preserve whatever health we have left at the moment, because we need to survive for that one day when several treatment options would be available to help us manage our disease, or even a cure. Will you help us bring that day forward, even one day sooner, by advocating for us? Remember, there are #MillionsMissing, and even just one day we get back is millions of days saved from missing.

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Image from page 401 of "The nation" (1865)

PACE trial

This week, an investigative journalist David Tuller published his articles on PACE trial (Trial by Error first, second, last), exposing the flaws from one of the most influential clinical study for CFS. Cort Johnson’s blog does an excellent job at summarizing lengthy articles published over three days, so I won’t go into the problems of PACE trials and what the articles revealed. Instead, I would like to share my quick experience with PACE trial.

When I was hospitalized in May, I had to deal with team physicians who had no idea about ME. It was frustrating to have to explain that I had this serious disease that they had no clue about, and the acute exacerbation could have a long term consequences. The resident doctor on my team went home and did some “research”. Of course, what she read was the PACE trial.

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Aside

Checking in!

I’ve been MIA for a while from this page and just wanted to check in and say I’m still here! Contrary to the behavior of disappearing, I’ve not gotten sicker. I was improving gradually (I consider this extended recovery from giant crash from this spring), with some ups and downs. And today is the first time in ages that I feel good!

My definition of “good” now is certainly not the same as when I was healthier, or even earlier this spring, but to give you an idea, during summer, writing anything for this blog was pushing my limit and I had to deal with consequences. Today, I’ve been using my laptop for a couple of hours working on stuff and it’s not having me reach for anti-nausea medicine. That can change any moment, but the fact that I’ve managed these many brain-powered hours is impressive for me.

I have several posts that I was working on, and if I have more good days, I will get back to them. The first one would be about the reasoning behind quiet months despite gradual improvement (short spoiler: so that I would have more improvement).

I am feeling that my battery is starting to run low, so I’m going to wrap up short here, but I think it’d be very telling for me if I can get through next couple of weeks without any relapse. I already came unscathed from one yesterday. I would have survived multiple doctors appointments over two weeks and upcoming dooms-day brought to me by pharmacy, doctor’s office, and health insurance (it’s the reason I wasted my rare good day instead of being more productive). Though, I certain wouldn’t mind if I can omit the dooms-day stuff among my feats because someone  fixes it before the weekend.

In the darkness

August 8th is Severe ME Day and this year’s theme is home care. I’m going a but tangential here because I’m not exactly writing about the need for home care for daily living (which I certainly do need). Nonetheless, when I heard this year’s theme, it reminded me of my experience with professional in-home care visits I received from the hospital discharge order.

Severe ME Day 2015. #sufferingthesilence photo

Severe ME Day, 2015.
I wanted to mark my arm with “M.E.” like others have done, but decided not to because, thanks to M.E., I wouldn’t be able to wash it off for a long time. Taking a shower is a luxury that I have not been able to enjoy for months now.

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Makeover

I’ve had the same hair style for a while – long hair dyed Burgundy, which would fade to brown, and curly permed, so that I wouldn’t have to do anything to my hair everyday. I’ve always been an I-would-rather-sleep-five-more-minutes-than-do-my-hair-or-makeup person, so I do not even own a brush for my hair. All I needed to do was to run through my hair with my fingers while shampooing.

As my M.E. picked up its pace quickly since last year, my hair washing became less and less frequent. By early spring this year, it was down to once a week, and by May, even that was becoming increasingly difficult. I hadn’t washed my hair for two weeks when I was admitted at the hospital.

At the hospital, when I asked for dry shampoo, they gave me a shampoo cap that I did not know existed. I just had to wear it like a shower cap, and someone would “massage” my hair to wash it with soap and water that were inside the cap. I brought a few of them home with me when I was discharged and used it occassionally. But shampooing this way while lying in bed meant no detangling hair during the wash – in fact I think it made it worse. Also the oil and dirt that were building up on my scalp could not be rinsed away.

On one of my better days several weeks ago, I noticed a giant knot on my hair. My ponytail was undone from rubbing my head against the pillow, and I couldn’t tie up my hair again because of the tangles. Without thinking much, I started running my hands through the mess.
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Chilli in the world

I just saw an article from the Huffington Post about the Chilli M.E. Challenge, covering the challenge taken by Drs. Lipkin and Hornig at Columbia University (video) Center for Infection & Immunity (CII). It’s exciting to see this challenge pick up momentum, and ME receive positive media coverage.

ME patients have to pay for every little thing that involves any kind of effort, whether we are conscious about the expenditure or not. Just simply being awake has a toll, which I didn’t realize until recently because before my ME got more severe, my daily budget was sufficient enough for minimal functioning. The price each patient has to pay for any activity (or non-activity) is different depending on the disease severity and presentation, but one thing is universal: if we spend more than we have, we have to face PEM (post-exertional malaise) and potentially risk our long term health.

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PEM by numbers

I want to share quickly what PEM looks like with an objective measurement. A good indicator of my condition is my heart rate. Here’s a poster I put together (using a free phone app and as quick as possible because I’m still not recovered as you can see, so please excuse the poor quality of graphical aesthetics!) showing my resting heart rate since last month measured by Fitbit. It tracks my baseline condition pretty well, with higher heart rate indicating my body feeling overworked, making me more susceptible to crashing.

PEM heart rate

PEM (Post-Exertional Malaise), also referred to as PENE (Post-Exertional Neuroimmune Exhaustion), is a hallmark symptom of ME. Patients with ME (PwME) experience severe exacerbation of symptoms following exertions. Threshold for mental and physical activities that would be too “exerting” is much lower for ME patients. Recovery time is prolonged, often lasting days or even weeks.

The top graph was snapped a while ago when I started thinking about this blog entry. The bottom graph was snapped today. Yes, I’ve been tachycardiac all day and writing a blog right now is not the best thing for my health, but f* ME! (And for that matter, publishing a post yesterday did not help but I have too many things that I have been working on and wanted to get something out). This poster would be better if I make it now instead of a week later, and I need to have a blog post to go with it! It is partially to show why I haven’t been as active as I would like recently.

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a stranger at home

It’s been a month since we moved to a new apartment. With dramatic change in my functionality and becoming bed-bound, we had to find and move to a new place ASAP to accommodate the hospital bed and mobility devices. We had to move later in the summer anyway, but with my sudden worsening of ME, any kind of “plans” we had meant nothing.

Within a week after my discharge, my husband managed to find us a new place, and we moved the week after. I was (am) still bed-bound, so you might wonder how I got around, getting to doctors and moving to a new place. The magic device is my reclining wheelchair.

I was discharged with the order for one (how I got it ordered is a part of a long story that I will write sometime), but the DME vendor that the hospital used didn’t have one in stock, and they didn’t know when their order would come in. Medical transport service that the hospital case manager referred us to quoted us $600 for a round trip to my doctor’s office. We (my husband) called around but the best we could get was $450. Yeah, no. So my awesome husband called around other DME vendors to locate a reclining wheelchair rental, and he found one!

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MIA is to be present

When I told my best friend (really more like a sister!) since elementary school, S, that I was at the hospital and had gotten much more ill, she immediately arranged a trip out here with her family. Her husband (also my friend) N is a student, so I know it’s not an easy thing for them to afford a trip out to the west coast, especially when planned in such a short time.

They were finally here this past week, as soon as the term was over for N. The last time I saw their little boy, J, was when he was just a few days old. I saw him come to this world and I love him to death. My friends well understood I could not afford to have visitors all day and I wanted them to enjoy the Bay Area and the civilization (Our joke! They live in a rural mid-west town). So the plan was for them to visit me every evening.

It worked out nicely. I would pre-rest all day, and they would stay until my bed time. I would immediately rest whatever fatigue I accumulated. One great thing about an old, childhood friend, is that we really are family and there’s no pressure for me to entertain them. It’s just great to see each other, no words necessary. Our evenings mostly consisted of watching J chase around my cats, and that was a good time. I’m so familiar with their voices like my husband’s, so it didn’t overwhelm me like having any other people talk around me – usually, I cannot handle two people in a room talking. They were also mindful about not over-stimulating me. And a lot of times, one of them would have to go chase J anyway to have constant eyes on him in an apartment that was not child-proofed. I saved all my energy to see them. I was not rested enough when I woke up in the morning, so I spent most of the days resting. Naturally I was mostly MIA on social media.

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Making sense out of senses

Thanks to my geeky father, I was exposed to personal computers earlier than most of my friends did. My dad set up his computer so that his five year old daughter could watch “stars” as if flying through the universe (which I later learned was a screen saver). When I was a couple years older, I had my own computer, a hand-me-down running on 286 processor, and I played games that came on floppy disks. I was the cool kid on the block. 
By the time I was nine or ten, I had saved up enough allowance, and my dad built me a brand new computer with it. It was a great feat. It was running on Windows 95 and I was still the cool kid who could type up homework and use the Internet.

During the lifetime of my first computer, PCs became widespread and most of my friends had computers at home. Computer programs and operating systems became more and more sophisticated each year with the growing power of hardware. To help me keep up with constantly evolving softwares, my dad would update the OS, or upgrade pieces of hardware for me once in a while. I remember bragging to my friends when he bought me a 4.3GB hard drive when my friends only had 1.6GB. But those small upgrades could not hold up much longer. I didn’t have much understanding about computers, but I knew about Windows’ multi-tasking, unlike previous MS-DOS. I could launch multiple programs and go back and forth. As I got older, I learned to use more programs, and each program’s minimum system requirement grew more demanding. Towards the end of my first computer’s life, it would barely meet the system requirement for new games that I wanted to play. With all the applications open and my switching around, my computer would get sluggish, and sometimes it would completely freeze the operating system and crash. All those programs that I was demanding my computer to run were beyond its processing and memory capacity.

With my M.E. worsening, I feel like I’m that old computer, being overwhelmed by all the stimuli that my brain has to process. All the signals are amplified, requiring more brain power to sort through. But my brain is less capable than before, so when it’s inundated with everything that my sensory nerves are sending, it crashes, just like the old computer did.

We easily recognize conscious effort that we have to put in when we are walking around a shopping mall, or thinking hard about the math problem in front of us. At some point in our lives, we had to learn these activities. But using our basic senses – seeing the blue sky, hearing morning birds chirping, smelling fresh-baked bread, feeling warmth of a tea mug, tasting sweet and bitter chocolate – is something that feels innate to us. Just like breathing, we don’t have to be conscious about using our senses. It feels natural.

So explaining to others that these things that should be effortless are overwhelming is not easy. It’s not only the physical use of my body that has a toll, but also anything that makes our brain spin. When I am overloaded with senses, everything gets tangled up and making sense out of those senses require much more effort than sum of each individual stimulation. That’s why I don’t like to have more than one person in the room with me, because I cannot make anything out of two different voices without getting exhausted. I  don’t listen to music although I love it very much – I was in choir in high school and one of classes I took during the first semester of college was music theory. I cringe when I sense fragrances and refuse to wear deodorant. I can’t kill time watching movies while resting in bed. Many things I loved or took for granted became a part of exertions that I am told to avoid if I want a chance for healing. 

So I sometimes wear shades indoors to limit the amount of light that my optic nerves have to transmit. Or I close my eyes while listening to someone talking to me, so that my brain has one less sense to process. I don’t keep my shades on as a fashion statement, and I am not lacking social skills because I’m not making the eye contact. I don’t mean to be rude when I request someone with a perfume on to leave the room. I am not trying to be annoying when I ask people to speak softer and slower, one person at a time. I don’t want to hurt someone’s feeling when I refuse a hug or gentle strokes on my hands. 

The thing is, when I am in those situations, I am most likely already overwhelmed. When I’m exhausted from flooding sensory stimuli, I don’t have energy to process anything and I get irritable. I just want some time to relax and avoid my body and/or brain shutting down. I am just trying to look after myself. But because I was trying to do what was best for me and M.E. didn’t spare me some energy to explain, phrases like “poor social skill”, “depressed”, and “flat affable” are permanently left in my medical record from my hospital stay when none of those words were true description of me during those moments. 

When I am overwhelmed by my  surroundings, a lot of times, I can’t even think properly about what I need to ask for some space. I get agitated that people cannot see I am clearly suffering. Or even if they notice I’m getting uncomfortable, but they don’t realize the offender is merely my existence in that specific place at that moment, and carry on. Or in some situations, I just end up swallowing all the entangled mess of signals going to my brain and face much worse PEM(post-exertional malaise) because I cannot explain my need to someone who is biased towards M.E. 

Sensory overload is not unique to M.E. At least (when I am in a better condition) I can express what was amiss to others around me. But a child with a sensory processing or autistic spectrum disorder may not even know what upsets her and throw a tantrum. People who experience sensory overload are not trying to be annoying or oversensitive. It’s just how our brains are wired to our sensory nerves. So instead of passing quick judgement as poor, socially unacceptable behavior, please open your heart and show your patience and understanding when you encounter someone struggling with  over-stimulation. We might be too overwhelmed at the moment to say thank you, and sometimes take a while to be able to even recognize your kindness (because our brains are too busy, not knowing what to do with all the stimuli), but we definitely will know and appreciate your thoughtfulness.